Invisible Disabilities Week; Congenital Heart Defect Awareness [Guest Post]


Michelle is a loving mother, who is not only a spoonie herself, but recently gave birth to a loving boy called Sebastian. Little Sebastian was born prematurely with Cogenital Heart Defect, and here is her story. Follow her on Twitter here!

1 in 100 children are born with a Congenital Heart Defect[CHD]. It is the most common birth defect. In a lot of children, the ultrasound does not pick up the heart defect unless you have a higher level ultrasound. Sometimes, a baby can go 6 months before someone notices something is wrong. CHD is a broad term for many different types of heart defects. Once you are diagnosed with a CHD, you are a cardiac patient for life. There can be an extensive amount of times between appointments, but they will always be there. Not all forms of CHD require medicine. Sometimes a condition can be “fixed” with one surgery or more, and sometimes they don’t even need surgery. There are 35 types of heart defects and they vary in severity. They can be Simple, Moderate or Highly Complex.

The day before my son was born, he was diagnosed with Tetralogy of Fallot. TOF can fall into the Moderate or Highly Complex category. His fell under Highly Complex. This is a Congenital Heart Defect that consists of multiple parts. The two bottom chambers of his heart had a hole connecting them, causing his aorta to draw blood from both sides. His pulmonary valve was underdeveloped, and the muscles below it were too thick. This restricted the blood flow to his lungs. Doctors used medicine to keep his PDA open, which normally closes once a baby is born and starts to actually leave. Without it open, his oxygen levels and heart rate would lower and he would have "tet spells." Sebastian was not able to breathe well on his own.

At 3 weeks old, my son underwent his first of many surgeries. They were able to do a full repair which would allow him to breathe on his own, and not have to be hooked up to any medical equipment. Sebastian will have many surgeries in his future. They had removed his pulmonary valve, so it would have to be replaced and then replaced every 10 years.

Medical advancements have allowed for children with a CHD to live well into their adult years, and many of them can live without restrictions. Having a heart defect does not mean that the child is broken, it doesn’t mean that you did something wrong during pregnancy (which took me a lot of time to accept), and it doesn’t mean your child is some fragile creature that you have to keep hidden away. Of course, you have to take extra precautions after surgery because they will have a weakened immune system.

CHDs are no longer a death sentence for children. They are highly treatable and leave most children with no restrictions growing up. This is a picture of the surgery my son had to undergo for his. Right now, he is completely med free and hopefully will be surgery free for the next 13 years. There are many resources online for Heart families, and most do special events to help those with CHD who cannot be as exposed to crowds do things that are fun. Always pay attention because even the slightest heart murmur can be a sign of something more severe.


Read all Invisible Disabilties Week posts here!


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